My name is Kait and I’m a 24 year old from Cape Cod, Ma. This is my first post and my first time in any sort of support forum. I initially started seeing a neurologist at 21 because I had been having headaches almost every day, with 2-3 migraine days a month. I was also suffering from extreme bouts of fatigue and some shoulder pain since about age 14. I was eventually diagnosed Chiari 1 with a 9mm herniation on New Year’s Eve of 2014. I had decompression surgery in June of 2015 and am now about 6 months post-op.
I’ve had no improvement in my pre-op symptoms and have begun to experience a multitude of other symptoms in the last two months. These include daily nausea, dizziness, light sensitivity, cognitive issue (such as forgetting what I’m talking about mid-scentence, knowing what I mean to say but having it come out wrong, and trouble with word retrieval),and pain in my shoulders and upper and lower back.
I think the hardest part of the journey thus far has been the overwhelming sense of isolation I feel. My family and friends are kind about it but they have no grasp of what I feel physically. On my good days I will just have a headache and some back pain, my bad days I can’t get out of bed, and that’s the spectrum I’m currently living on. Its as though they can’t fathom that someone in their twenties could be experiencing chronic pain, but I suppose that goes with the whole ‘invisible illness’ apect of Chiari.
I’m feeling positive about joining this group as I’ve never actually spoken to anyone else with this illness. I’m open to any suggestions for coping with Chiari, and would love to learn about other folks journeys as well.
Thanks for taking the time to read,
Love and peace,
Kait
Hi, Kait! I'm glad you joined us! :) Talking with others deffinatley is a big help in coping.
I'm 25, and in a place where I have no certainties. I had ignored my fatigue for around 7 years and when it got crazy bad, I saw a neurologist who said, I'm just depressed. I'll be seeing another neuro hopefully soon, and hopefully I'll get some answers. Honestly, I can't imagine being so mentally strong today if I hadn't joined this group, because for five months now I've been so tired that 80% of my day I can't do more than watch tv. But I'm optimistic.
Jules- Thanks for the link to the "Dizziness and Chiari"; super helpful!!
Fugu- I cannot express to you how reassuring it is to hear from someone my own age who is going through the same experiences I am. I was also told I have depression by my first neurologist and she pressured me to take an anti-depressant that had been shown to reduce headaches; she always seemed slightly frustrated with me for insisting I didn't want to take pills as a solution. I feel like I have no real answers from any doctors and in the mean time my health is deteriorating. I hope some day we can both find the answers we seek. Thanks so much for sharing!
Yeah, my family doctor( you call them primary car physician in the US?) also thought it might be depression, but she was also open to the Chiari aspect. She said, since the symptoms are so similar, it might benefit me to see a psychiatrist. If I didn't have depression, the psychiatrist would make it official, if I did have it, I could get treatment. So I went to the psychiatrist and was on 2 different antidepressants and neither helped. She also gave me nootropics to see if they increse my energy levels, but they did more harm. She also was open to the thought of Chiari being the primary cause and gave me a diagnosis of neurathenia. So the next time I see a neurologist, I can show them that depression isn't the cause of my symptoms. :)
I have also seen mental health folk to have them rule out depression or any other mental health concerns, so that physicians can focus on Chiari (or anything else!) without having a "depression" label that clouds their perception of my concerns and symptoms. Unfortunately, depression, while a valid and real diagnosis, is often seen as a character weakness in the eyes of doctors. I say 'rule depression out or treat it if it is there'!
Can I ask where you had your surgery and/or who are you considering for a second opinion?
I went to a neuropsych because I'd noticed cognitive decline. Word-finding problems was the main one. On the testing, it turned out my performance on the Tower of London test (planning) had also tanked. (Unfortunately it went from "very good" before to "low average" after, so they tend to ignore this change. But it's really annoying to me because I *enjoyed* that type of task before, and now...I just can't do it. It really feels like I've lost all ability to plan...when doing these tasks I now feel like I'm just aimlessly "guessing and checking.")
*Anyway* the neuropsych thought the new pattern of strengths and weaknesses suggested depression. I guess my cognitive decline has hit similar areas to those that depression hits. Maybe yours is similar?
HI Im a new member here also,living on cape cod...diagnosed with chiari type 1...ive had headaches for the last 3 years,fatigue ,depression thats are my syptoms...i would like to have a surgery just to get better but my neurologist doesnt recommend yet///any advice for headache relieve.thanks,good luck to everybody